Monday, July 14, 2008

I want great care!

Being screamed at by a surgeon in front of a ward full of people that I did not and had never had anything wrong with me and should never have been 'given' any surgery (I suppose I can give him credit for that part even if he was somewhat mistaken about the nothing wrong part) It was followed up with his promise to make sure no other doctor in the hospital treated me and assurances he would be urgently referring me to 'the psychologists'. I know the NHS can be a bit slow on occasion, but I feel it's safe to say 5+ years on that referral was never made. PAL's advice? Well, you see that's how men speak to women in his (European) country of origin and so you'll just have to put up with it.

The GP who, after telling me I was somatising changed his opinion to tell me I just made it all up because I liked the attention. Contrary to seemingly popular medical opinion the two are not the same. Despite claiming he would be happy to be proven wrong, his response to my initial diagnosis of EDS by an internationally respected professor of rheumatology was 'we'll see about that'. Well, I suppose it is difficult when you've told the patient they definitely, do not, under any circumstances have that condition or any other related one as they have nothing wrong with them.

The paediatrician who, when I was 14 deemed it appropriate to suggest that I should lose weight if I wanted to appear taller. I've never weighed more than 50kg. The GP who after I was diagnosed (at the age of 28 and severely disabled) commented that they 'were not surprised, and didn't I always say you had some sort of congenital laxity issue', following it up with 'so, is it better to be physically ill than mad then?'

Then there was the paediatrician who laughed in my face and told me not to be so ridiculous when I asked if I could have Ehlers Danlos Syndrome. Oh the irony.

The consultant who insisted I must never get pregnant because there was such a high probability I would die. Horribly. Good job I checked and pushed for clarity on that one as it turned out his claim to know all about EDS via the sister of someone way back at medical school (oh, you know her too?) turned out to be knowing so much he didn't know there were different types. Or that the vascular type of EDS is the only type limiting life. Or in fact the only type to potentially cause the kind of complications he vociferously insisted I would experience during pregnancy. Sterilisation anyone?His listening skills were tip top too. I said surgery wasn't an option...so he booked me in anyway...and took the time to write explaining it wasn't surgery, it was just a procedure. Funnily enough I wasn't fooled. (the surgery/procedure was non essential and the reason I'd refused was because people with EDS tend to have such disappointing surgical outcomes)

The A&E doctor who suggested I should sit on the sofa surrounded by bubble wrap, watch tv and never move so as not to be injured. They weren't being sarcastic either. Or witty.

Oh, and my personal favourite. The doctor, who upon hearing my boyfriend was a new house officer suggested 'he come down this end to get a proper look' y'know, as he wouldn't have had the chance to 'see one of these' yet. Trust me on this, they are not words any woman wants to hear when her legs are in stirrups. I really should've thrown the doctor out of the room at that point and not my boyfriend, after all, he was only following the advice of a senior colleague.

My conclusion? Communication skills, or more importantly the lack of are the most significant factor causing upset between patients and doctors. It shouldn't take a website to improve the situation, but, given the current lack of appropriate ways to resolve disputes perhaps it is actually a step in the right direction?

6 comments:

I have to be a little careful here, but I can firmly agree with everything you have said and it's a disgrace you have been treat so babdly in the past....I think I am lost for words to be honest!!! How many times can they get it wrong??..xx

My God! Unbelievable.As a PhD student I used to have to give presentations on my work. One of the students was writing on the Alder Hey organ retention scandal. The opinion of the law professor who ran the presentation sessions was "Doctors are known for their lack of communication skills, maybe they just didn't know how to ask the grieving relatives for organ donation." WTF??? Were the Doctors not human beings first and foremost?

Agree with you: there will always be disagreements as to who is a good doctor and who is bad. Perhaps one of the problems the doctors have with the review sites is that they do no allow the doctors to defend themselves, and that, by necessity, reviews are often short. In addition, they are often anonymous meaning that doctors could be open to libellous statements from anonymous patients with no means of defending themselves. One way of making the sites more reflective and transparent would be to insist on the names of reviewers (which, if possible, should be verified). After all, if you've had a particularly good or bad experience of a doctor and want to share it with the world, why should you wish to remain anonymous? If it's a good experience, sing it from the tree tops and let your Dr know, and if it's bad presumably you won't be going to back to that Dr?

While I am not in your boat, as a transplant patient, I have run across my own fair share of docs who live by the saying "What we have here is a failure to communicate."

While working as a paramedic, I saw my fair share of those, and saw some really excellent docs whose ability to communicate and connect with their patients was stunning.

Suffice it to say that docs here in the US have actually started to train in the art of communication with their patients, to help them get over the nervousness and teach them good skills in this area. Here in the Rochester, the medical school at U of R actually uses local actors to portray patients and help them with not only their assessment skills but their communication skills as well.

Here is one of my own anecdotes, and it wasn't from a doc. It was my own transplant coordinator, an RN who should definitely have known better.

I was quite ill last year from an infection that landed me in the hospital for a week. Some months prior to that, when my liver function numbers were a little out of whack, my coordinator was again suggesting to have a liver biopsy, which I just had a few months earlier. (Not for cancer, but it is a common method of diagnosing certain liver conditions.) I suggested that instead, trying to remove a certain new medication that has been known to cause liver issues from time-to-time to see if it was the culprit. I told her that I would like to avoid another biopsy, if it is not needed. Her response? "Well," she says sarcastically, "It is better than going through another transplant."

My response? "How the hell would you know what it is like to go through a transplant? Have you had one?"

Dead silence. I never got an apology, but she never pulled a stunt like that again.

I personally have had a doctor ignore my oral cancer with the words 'Oh, that's interesting, let's just see if it goes away, shall we', and refuse to refer me. I've also had a doctor prescribe me tetracycline while I was pregnant, which is particularly interesting since I'm allergic to it. I have argued with a doctor about to inject me with a drug I knew to be a form of penicillin, which I'm also allergic to.

My husband has had a serious infection ingnored, and I was told to give my young son pain killers and wait till morning, when he had a dislocated elbow (instead, I bundled him into the car and took him to the hospital where it was speedily reduced).

In all cases, the doc was disinclined to listen, discuss or apologise appropriately. I'm now very, very wary of doctors.

Rae: You make an important point, how many times can they get it wrong? Experience tells me that once one doctor has given a negative opinion of a patient then it tends to take something very major to shift all the following doctors away from that opinion. I think that's one of the most important things needing to change to prevent this kind of behaviour. X

Kim: Thank you, hugs back!

Fiona: The really sad thing is that my experiences are far from unique. A friend of mine (who at the time was not diagnosed with EDS) was left for so long with an unstable spinal cord injury (12 + months) that she's got permanent paralysis, lack of sensation and incontinence amongst other joys. The reason? No-one believed there was anything wrong with her, and as she refused some ridiculous surgery that a local orthopod invented (literally) wanting a second opinion they basically just ignored it, even after she was diagnosed, by which time of course the damage was long done. I think many doctors, especially surgeons somehow lose what little communications skills they had to start with in the process of trying to detach enough to be a surgeon. I know communication skills are now taught, but overall I think there is still a refusal to acknowledge how widespread and serious these issues are within the profession.I agree with you about leaving a name on such sites, but I'm not sure how to verify it, I actually think that if left to it patients will solve the problem of these sites for doctors as there will be as many positive as negative reviews. I also feel very strongly that the medical bloggers so incensed about this site are misleading at best to make claims about ruining people. There is nothing ruinous about stating a doctor did not listen or that they were arrogant, I also don't think it's libellous, after all the defence to defamation is the truth! I think though that one major issue we have in the UK is that many people are not able to change doctors if there is an issue and so are forced to go back to a doctor after a less than positive experience. I don't think that is in the benefit of anyone. PS what is your Phd about?

MrN: Medical students are now given training on communication but from what I've seen there is still a very long way to go before things are even adequate. I'm horrified but not very surprised by the comments made to you, what a stupid thing to say and how offensive! I'm glad though that she has never been so ignorant since

Jay: OMG, that's horrifying! It really does all come down to communication I think, certainly far more frequently than an actual skills issue. I am more nervous of doctors than I am wary, the problem being that in the back of my mind I'm always afraid someone will decide not to believe me. I'm very lucky to have several excellent doctors these days and it does make a great difference. I hope your cancer was successfully treated in the end? BG x

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